So, today was Katie’s appointment with the neurosurgeon.
I was expecting a pretty basic meet-n-greet. This is a Baclofen pump, this is how we place it, etc etc. Let’s get this on the schedule quick and move on to the big surgery, which is already scheduled for October.
We spent a good 45 minutes with this doctor. She seemed a little preoccupied with Katie’s diagnosis. 1. Agenesis of the corpus callosum. 2. Cerebral palsy. 3. Dystonia. These all kind of flow together, right?
Well… sort of. Not exactly. Actually, many people with agenesis of the corpus callosum are walking and talking. Some of them don’t even know they are missing this part of their brain. Sometimes this is an incidental finding when someone needs a brain MRI for some other reason.
Of course, this is a spectrum that affects people differently. I know several other kids with ACC. Some of them walk, some of them don’t. Some of them talk, some of them don’t.
Anyway, this doctor (who is Harvard trained, and has a seriously impressive CV) was a little concerned that something might be getting missed.
We haven’t had much luck with oral meds or Botox to help Katie’s muscle tone. So, the Baclofen pump might not work. This means the Baclofen trial, where they give her the drug by epidural to see how she responds to it, is back on the table.
She also wants a spinal MRI (which the orthopedic surgeon hadn’t mentioned to date. Great, let’s take my confidence in him down a notch.), and a ‘quick’ brain MRI. She is wondering whether Katie might have a tethered cord. This is a structural anomaly at the bottom portion of the spinal cord, and can have an impact on the lower part of the body. It is usually pretty fixable with surgery.
So, we agreed to go ahead and do the trial and do the MRI – hopefully together. Then we moved on to the next appointment.
Doctor B (appointment #2 for the afternoon) had talked with Doctor A. She had intended that we would skip the trial portion, so she was backpedalling a little. Doc A was hoping we could administer the trial dose while she was still under the anesthesia from the MRI. Doc B says this won’t work, as we won’t know what result comes from the anesthesia and what comes from the drug. Also, to do a single dose trial, she would need for Katie to be cooperative and to hold still for a lumbar puncture. (Oh, did you hear me laughing hysterically? The rest of Minneapolis did.)
So, now we need to schedule a MRI. We need to schedule a drug trial that sounds like it could be 2-3 days in the hospital. I still have no confidence in this trial, because Katie hates (HATES!) all things medical, and sitting in a hospital is guaranteed to result in a very grumpy kid. Also, with the epidural, she won’t be able to be in her chair, which is one of the things that is currently a challenge, and where we’re hoping to gain some relief.
Then I asked the million dollar question. If oral meds don’t work, and Botox doesn’t work, and the Baclofen pump isn’t a good option… what do we do about her muscle tone?
Doctor B had to pause at this point. Her first response was pretty telling, though.
“I would refer you back to a neurologist at that point, to see if there’s anything they could do.”
Translation: there isn’t anything more I can do.
But she was still chewing on it. She wanted something to give me, clearly.
“There is deep brain stimulation.” She looked thoughtful. “We do have a doctor here who does that. It usually works best for people who have primary dystonia from a genetic defect, but it might be an option.”
Did you just hear me sigh? The rest of Minneapolis did.
So, the doctors are going to have a confab about my little sweetheart. Doctor A and Doctor B have both promised to get back to me by the end of next week. Not what I expected or what I was hoping for on this trip.
And now, I have something new to research. Which means I won’t be sleeping any time soon.